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Thursday, February 26, 2015

During one of Morgan's appointments with our pediatrician, our
doctor had a first year medical student shadowing her. She asked if I would be
okay with discussing Morgan's case with him. I said I would be alright with it.
Morgan was still receiving treatment for infantile spasms (a type of seizure)
and we had to go in twice a week to monitor her blood pressure. High blood
pressure is a side-effect of the Prednisolone that she was taking and her blood
pressure had been elevated for a few weeks. It was exhausting but necessary to
come in for a check twice a week. (The Prednisolone did not work and her
seizures have evolved to tonic seizures. We are now trying our third med).

I've read a lot of articles, blogs and comments from parents
about this very topic. Treating kids like Morgan as test subjects or a research
opportunity. I found the opinion on this to vary greatly. Some really took up
issue with doctor's fascinations with their kids' conditions. My take on it is
this: The more doctors and various people in the medical community show
interest, the more they learn. The more they learn, the more they may be able
to help Morgan or other kids like Morgan in the future. That is truly my
greatest hope.

I want to talk about her syndrome and her medical problems to
anyone who wants to learn. I want as many people in the medical community to
learn from her as possible. By going through her history with me, maybe they
will want to know more, do more.

It isn't always easy to talk about Morgan and Idic 15
Syndrome. Six months ago I couldn't talk about it without falling apart. It
isn't always easy to use the term "special needs." But it's very easy
to see how talking about it can help teach and raise understanding and
awareness.

I hope that talking about it makes me stronger and a better
voice for Morgan.

So I found myself spending quite a bit of time with the
first year med student, going over everything we've been through with Morgan
and answering his many questions. One question I liked hearing was "Is
there anything you wish a doctor had done differently to make her care
easier?" My answer to him was, "Don't assume anything until the whole
story has been covered, her chart fully reviewed and any necessary research done.
Then perhaps, you have a place to start, but never assume you know what's going
on with her or that a treatment will work. It's the doctors that view Morgan's
case as a puzzle with many pieces that seem to come up with the best plan." I wonder
if he took that answer to heart.

Tuesday, February 24, 2015

More hard news. More difficult days. We get only glimpses of
who Morgan is. Morgan was diagnosed with Infantile Spasms last month. Infantile
Spasms are a very particular type of epilepsy. They look as though she is
flexing her arms out and then bending forward simultaneously. They last for
only 1 second but they happen in clusters, so she may have 5 to 23 spasms in a
single cluster lasting for 1 to 2 seconds a piece. She started these in
December. They are very hard to recognize and very subtle so it took me a
little time to see her spasms before realizing they were involuntary movements.
There is a couple reasons they are difficult to identify. The first is that
Morgan has hypotonia, or low muscle tone in her arms and neck, so her spasms
are not very pronounced. The second is that they could, and were at first,
mistaken for voluntary movements done during play. But I know that seizures are
a big part of her Idic15 Syndrome so I was very much on the lookout for any odd
behaviors. When seeing these, I suspected they were some kind of seizure but
truly hoped I was wrong. The neurologist and an EEG confirmed that they were
what I feared.

They treated her with a very high dose of daily steroids and
that certainly helped but did not get rid of them altogether. It was something
that we could try for only a month. After that, no matter what, we had to get
off them. They are not safe long-term. So we started a different drug, Topomax,
to bridge her as she came off the steroids. Well, that was less than a week ago
and her spasms have been increasing.

Not only increasing, but changing in nature. They have been
getting longer and the look of them have been changing. When she has them she
looks "frozen." It's unbelievably disconcerting. I've timed them to
last up to 2 minutes. Way too long in my book. If we ever hit 5 minutes we have
to call 911.

We were back at the neurologist yesterday and I'm happy with
how he is handling Morgan's case. He listens to what I have to say and seems to
have a certain amount of humility, freely admitting that he doesn't know
everything. But he is approaching Morgan's case as a puzzle that needs to be
solved. So far, it has been this type of approach that we've seen in other
doctors that has yielded the best results. I hope he can find an answer for us.
He did confirm that the seizures were looking more like tonic seizures than
spasm. I don't like the sound of that. I don't like watching them. I don't like
what they do to her.

I hate the seizures. I absolutely hate these seizures.
Watching Morgan go through this is... I'm at a loss for words. I struggle not
to panic every time I see her having one, which happens daily. I try to concentrate
on how long they last, how many she had, what the circumstances were, all so I
don't panic and loose my mind. I fear so much for her that the stress and
tension has built up so that I find my jaw hurts from clenching, by shoulders
hurt from tension and I seem to have trouble getting to sleep (a new thing for
me, I usually fall into bed and that's that, of course until one of the little
ones gets me up in the middle of the night).

I had to take Morgan in today for her 4th EEG and the nurse
presented us with the "epilepsy bear." A very cute little bear
donated by a certain epilepsy foundation. It was a gift made to comfort.
Honestly, the angry part of me wanted to say keep the damn bear. I don't want
to be a part of this epilepsy community. I have a lot of anger and sadness at
times. I thanked the nurse for the bear. I know it was a very kind gesture.

I don't want these seizures for her. I hate seeing her development
further delayed, her amazing personality further out of reach. I feel so
helpless. All I can do is watch and wait.

Monday, February 9, 2015

Perhaps it is easier for some people to wait in another room
while nurses and techs work on their kid but I learned that is not the case for
me. Morgan had her Brain MRI a few days ago and I discovered that it is very
difficult for me to wait in another room. I was allowed to be a part of every
step of her CT scan, Echocardiogram, EKG and EEG. I like to make myself useful
and assist the nurses where I can. I also need to be there to comfort Morgan as
she undergoes all these tests. So I was caught off-guard when the nurse
practitioner began to guide me out of the control room after Morgan was safely
in a drug induced sleep and brought her to the "machine" for her MRI.
"I can't stay?" "No, it's policy not to let parents stay and
watch. We once had a parent burst through the doors while the MRI was underway
and it's just not safe." I understood but I could feel myself going tense.
At least when I'm able to watch I busy myself with watching whatever monitor
Morgan is hooked up to. I learn a lot while listening to the nurses and I appreciate
the amazing science in all this, while willing Morgan to be alright and keeping
my nerves and emotions under control. Not this time.

So I waited. The whole time anxious and mentally seeing
Morgan in that room by herself surrounded by the loud rhythmic hum that I could
feel in my bones while standing just outside the door. Only 45 minutes went by
but it seemed a lot longer. It gave me time to worry about the results. I like
to pretend that I'm not that concerned; that nothing scary will turn up. But
the truth is that it dominates every corner of my mind. I'm constantly having to
stomp down the what if's that come up again and again. I'm at war with myself.
Positive thoughts waging war against the negative. I was relieved when the
nurse came and got me. The war in my mind could be paused. Morgan was out of
the MRI and needed me.